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A Guide to Living with Stage IV Kidney Cancer

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Long-term survivors of Stage IV kidney cancer generally come in three varieties:

  1. The fortunate few percent of Interlukin-2 patients who had a durable, complete response.
  2. A smaller (but growing) group that has indolent disease or disease that responds, for an extended period, to one or more treatments (including immunotherapy). The group has increased thanks to TKI’s, and as more treatments of more types are available, the number of long-term survivors of this type will continue to grow. Local treatments (cyroablation, radiation, surgery, etc.) also extend our lives.
  3. A third group is beginning to emerge. Newer immunotherapies, such as the PD1 and CTLA-4 check point inhibitors, are starting to give some patients complete responses that hopefully will prove to be as durable as IL-2.

Groups one and three have a reasonable expectation that they are cured. But the second, my group, has the great good fortune to have what I call “chronic cancer.” I use the words “great good fortune” in all seriousness. While everyone desperately desires to be a winner of the immunotherapy lottery, those of us who have survived for a number of years should never lose sight of how lucky we are.

Immunotherapy can be a benefit even when it isn’t a home run. These treatments are not all or nothing. I have benefitted from immunotherapy, even though I have continued to have recurrences. I have taken six immunotherapies and have had no other systemic treatments since 2011. I even had a complete response with one tumor, only to have a met pop up at another site almost immediately.

The fact is, based on published data, only about 12% of Stage IV cancer patients survive 5 years after diagnosis. At 10 years, it is down to only a few percent. Someone who is still in the game after 9 years with 10 different drug therapies, 10 new sites of disease, 5 sites of radiation treatment, a surgery and a cyroablation (such as I) has no reason to complain and every reason to be grateful.

Sometimes, in the trenches of our personal battle against chronic cancer, all we can see and feel is the burden of dread of our disease and the discomforts of our treatment. However, we should see our ongoing struggle as an opportunity to accomplish important things, to experience joy and love, and to continue toward a hopefully better future. I have come to believe that we have to place our disease and its treatment to the side and see it for what it is: a distraction from living our lives, as best we can, under the circumstances we face.

The unpleasant drug side effects, the painful procedures, the disappointing scans, and the new metastases are all part of the life we have been given, but we should never forget how lucky we are to still be facing these challenges. And remember that survival statistics are, of necessity, backward looking and out-of-date. If you are newly diagnosed, you can confidently expect to see better numbers in the future.

I am a few weeks away from the ninth anniversary of my diagnosis. The last 9 years have been hard and, to be honest, I expect the years ahead to be harder. However, I am extremely grateful for the time I have been given—time denied to most of my fellow Stage IV kidney cancer patients. I will not give up the fight, but I also hope to not let my battle with Stage IV cancer consume my life. The best guide I know to living with Stage IV cancer is to simply “enjoy the day.”

A philosopher said: “If a man has a ‘why’ for life, he can cope with any ‘how.’” I am fortunate to have my “why,” and I have coped (and will continue to cope) with the “how.” If you have Stage IV kidney cancer, I hope you have a complete response to immunotherapy. However, if you don’t, I hope you are lucky enough to get to face and fight your disease for many years.

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Gary Poteat is a kidney cancer warrior who has been battling stage IV kidney cancer for 9 years. He was a medical physicist before his retirement.
  • Peter Rooney

    Thanks for the inspiring words, Gary. I’m in group 2 as well, and plan to be there for a while longer!
    Peter

  • Anders Hallberg

    Thanks for a great text!

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